Autistic Daughter's First Period / Indiana Vaccine Injury Report

[Guest guest]

FEAT DAILY NEWSLETTER Sacramento, California Letters: FEAT@...

" Healing Autism: No Finer a Cause on the Planet "

_____________________________________________________

Autistic Daughter's First Period / Indiana Vaccine Injury Report

Monday, February 28, 2000

Also: Social Insecurity: Asperger's

[This report comes from East Coast editor . Here are

some useful talking points to discuss with your daughter's physician.]

A number of my friends have been worrying about their autistic

daughters getting their first periods.

I questioned why a 10 year old autistic girl should have to deal with

a menstrual period at all--these kids have enough to contend with as it is.

I knew from my own experience that gynecologists sometimes recommend that

women simply take the active portion of the birth control pill month-round

in order to stop having periods at all, and that this is standard practice

among athletes and ballerinas. Taking the active portion of the pills 28

days out of 28 is a safe practice since the " period " women have when taking

the birth control pill is not a real period at all but simply breakthrough

bleeding. A birth control pill period is bleeding due to the sudden drop

in estrogen when a woman switches from the active estrogen/progesterone

pill to the iron pills included at the end of the package. (Personally I

question whether that sudden drop-off in estrogen every month is a good

thing, but I don't know.)

(The story I've read as to why the pill was put together this way is

that the doctor who invented it assumed women would miss having their

periods, so he structured in a fake one. I believe it.)

I also knew from my reading that " incessant menstruation " (i.e.

monthly periods for years on end--this is the term for it) is considered to

be a health hazard. In a " state of nature " women would begin having babies

and nursing shortly after becoming fertile; they would not spend 30 years

having menstrual periods interrupted by a couple of pregnancies and 6

months of breastfeeding. Constant menstruation is the cause of diseases

like endometriosis, which " native " women apparently do not get; it may also

be linked to ovarian and breast cancer. (Women who've taken the pill for

many years have demonstrably lower rates of ovarian cancer.)

So of course I was thinking the best course would be simply to give

autistic girls the birth control pill, and continue the active portion month

round. I emailed my sister-in-law, a nurse-practitioner who is on the

faculty at UNDMJ (and who I trust on every and every medical issue--she's

incredibly sharp) to ask about this and received this response:

Dear : I have some preliminary info for you. What I am

being told by the adolescent practitioners on the faculty here is that the

best thing to do is to place these girls on Depo Provera injections as

opposed to the pill. They get a shot once every four months and that is

that. I still am looking into OC use for 28 days as well. Love,

* * *

Vaccine Injury Report - Indiana WTHR

This Wednesday in central Indianapolis, Indiana WTHR Newscenter 13

(NBC) will air at 5:30 pm an interview they did with Representative Dan

Burton and his daughter le Sarkine with her kids, and Barbara Loe

Fisher on vaccine injuries. The website for WTHR is http://www.wthr.com

* * *

Social Insecurity: Asperger's

[by Ijams Sargent in the Sunday Boston Globe. Not available

on line. Thanks to G.]

What is the definition of social awkwardness? If you are a young

person, it might mean standing too close, talking too loud or for too long,

turning your back on a conversation, or never meeting your friend's gaze. It

might mean being physically awkward as well, never really getting the hang

of team sports or the rhythm of a pick-up game on the playground. It might

also mean feelings of severe anxiety in the presence of large, noisy groups

of people or unusual situations.

In the past, well-meaning educators and parents have thrown up their

hands and labeled such kids as lovable misfits, without closely examining

the common thread that ties these behaviors together. Or, in the more severe

cases, the parents would explore mental-health resources and often came away

with conflicting answers and more questions.

Now a relatively new diagnosis has put a name to these debilitating

characteristics. It is called Asperger's Syndrome, a neurocognitive disorder

defined by a severe shortage of social skills, lack of eye contact,

attention issues, clumsy motor coordination, and often a peculiarly

excessive focus on particular interests.

" We had been told he was retarded, that he had a seizure disorder, we

had him tested for fragile-X syndrome, " says , a mother of a 13

year old boy with Asperger's Syndrome. The disorder has qualities that mimic

numerous other diagnoses, and often many children - and adults - find

themselves mislabeled.

" The syndrome has fallen between the cracks of (different) disciplines

as well as the educational system, " says Dr. Fred Volkmar, professor of

child psychiatry at Yale University School of Medicine.

In order to serve his clients more completely, Volkmar knew Asperger's

Syndrome, or AS, needed to be teased out of the vasttabgle of learning

disorders that could be labeled in a child who in reality had the syndrome.

In 1994, he and his colleague Dr. Ami klin, were instrumental in AS's

inclusion in the Diagnostic and Statistical Manual, a bible for

mental-health professionals. Asperger's Syndrome was named for pediatrician

Hans Asperger, who in 1944, observed a small group of boys who displayed

unusual behaviors, both linguistically and socially. But his doctoral thesis

went largely unnoticed until the early 1980s when renewed interest revived

the pursuit of study on this subset of the population.

AS lies on the high-functioning end of the autistic spectrum. " It's a

bit like visual impairment, you've got kids who are blind, that's classic

autism, then you've got kids who need to wear glasses, that's AS, " says

clinical psychologist Tony Attwood, author of " Asperger's Syndrome: A guide

for Parents and Professionals. "

But unlike autism, children with AS often have no language

difficulties or delays. In fact, precocious verbal ability often masks their

troubles with life skills. " You might have a ten-year old with the verbal

skills of a 14-year old, and the social skills of a 2-3-year old, " Volkmar

says.

Kids who are unable to decipher body language and facial expressions

are at a large disadvantage because, according to Volkmar, up to 80 percent

of communication is nonverbal. Misreading these social cues leads to great

difficulties when making friends and sustaining relationships.

Everything conspires to the worst set of circumstances for kids with

this kind of disability, " says a mother of a middle-scholar with AS. " My

son's reactions are off because it hard to know - is it good-natured joshing

or vicious horrible teasing? "

Volkmar says, " It's not that (these children) are uninterested in

social interaction, it's that they are so inappropriate. Their social

difficulties are severe and persistent. "

The reason for these poor nonverbal skills emanates from a dysfunction

in the temporal lobes of the brain. In AS patients, the right side of the

brain, which governs cognitive ability, is thought to over-compensate for

the diminishment of functions in the other areas of the brain. According to

Attwood, " They solve social reasoning problems as others would solve an

algebra problem, with intellectual effort. "

This kind of impairment means other kinds of problems as well. The

ability to integrate the kaleidoscope of everyday sensory information is

very difficult for those with AS. An overload of sights, sounds, and smells

can overwhelm the person with acute anxiety. " They go to school, which I

call a social minefield, and they get very anxious and they may get very

angry, " says Attwood.

This anger is often misinterpreted by teachers as simply oppositional,

but it is usually a reaction to overstimulation. " Teachers see them as

troublemakers, as bad kids, as defiant kids, as kids who don't want to go

along, " Volkmar says. " They don't appreciate their weaknesses in other

areas. " These children have many strategies for keeping their anxiety at

bay, and one of the strategies can be a hallmark of AS, what the diagnostic

criterial calls their " restricted and repetitive behavior patterns " . This

partly describes the narrow interests that can consume much of these kids'

free time and conversation. Though the subject matter may change over the

years, when these kids find an interest or a hobby, they often become its

slave rather than its master.

" This is not your usual child who has a penny collection or an

interest in dinosaurs, " Volkmar says. " An AS child graduates to other things

that become much more unusual. I know of someone who knows the name of every

member of Congress, the wife's name, and the street address, the children's

names, their dates of birth, the whole nine yards. "

The interest can become the child's whole world and often is the

initial starting point of underscoring his social awkwardness. it also can

be a place of solace, of predictability for those who find their world a

chaotic, random place. " I think of Tom's interest as a comforting

distraction, not necessarily a negative, " says about her son.

" The obsessing comes when he is feeling overwhelmed and that's a clue to me

to find out what is really going on. "

Attwood believes that tenacious individuals with AS have made valuable

contributions to the world. " I don't see AS as a tragedy, " he says. " ...I

see that many advances in science and art have been made by people with AS

with their different way of thinking. "

Indeed the precocious abilities of those with AS have enabled many to

excel in their chosen fields. But at school age, their very intelligence

camouflages their struggles in managing the rest of their lives. It is not

long before the social problems come nipping at the heels of their academic

proficiency. " In almost every instance, eventually, the AS gets in the way.

The social aspect affects the educational component, " says Dania Jekel,

executive director of the Asperger's Association of New England, an

organization that runs a clearinghouse for information on the syndrome.

Treating AS requires fine-tuning therapy to the patient's most obvious need.

Some might need to feel comfortable starting a conversation and may attend a

socialization group to work on pragmatic language skills. Others might need

to integrate their world more completely so that they can transition

smoothly between activities. This might mean cognitive therapy with a

mental-health professional.

Because most children with AS have normal intelligence, many attend

conventional schools. Once there, most experts recommend immersing the child

in as many mainstream activities as possible. Because sensory overload can

come with team sports, lots of AS kids choose to participate in sports that

emphasize the individual, such as track or skiing. Psychiatrists and

mental-health professionals often prescribe medication to combat the related

twin demons of AS: anxiety and depression. As Attwood points out, those with

AS " are acutely aware of being different and that may lead to secondary

psychiatric problems. "

Because AS is new on the mental-health radar screen, parents often

find themselves doing battle with administrators and educators. The

diagnosis requires parental vigilance and an ability to take the long view.

Many with AS lead full lives, complete with jobs and marriage. " What these

individuals do, by their heroic endeavors, and, we hope, training, is learn

intellectually how to solve social questions, " says Attwood. But, for some,

merely making those with AS " pass " in the larger world undermines their

uniqueness.

says, " These kids need to be accepted for themselves, I

don't think they need to be changed. I think they need to find their

niches...and Some resources on Asperger's

Information on Asperger's can be found in books and on the Internet.

Because there is a lot of ongoing research on this topic, the Web keeps

current with the latest news and treatment options.

Discussion groups on varied topics abound, as well as message boards.

Parent-to-parent advice is often compassionate and on the mark. As with any

Web sites, make sure the source is legitimate. Here are some of the most

comprehensive sites.

http://www.udel.edu/bkirby/asperger/ http:/www.asperger.org/

http://www.aane.org

~~~~~~~ WHY YOU MAY WANT TO SUBSCRIBE (NO COST) TO ~~~~~~~~

FEAT's Daily Newsletter: Each day we collect autism features & news as

it breaks. To Subscribe (or unsubscribe): http://www.feat.org/FEATNews

____________________________________________________________

FEAT: http://www.feat.org Search: http://www.feat.org/search/news.htm

Editor: Lenny Schafer | Eastern Editor: | News Wires: Ron Sleith

schafer@... | PhD | RSleith@...

[Guest guest]

i just want to note one thing about depo provera as a nurse a mother and

one who has taken this product--- i will never do it again.... but it

depends on your personal situation. this drug has been linked

conclusively to the premature LH surge in ovulating women-- it has some

serious consequences and directly affects the pituatary gland... just my

two cents- be cautious.

FEAT wrote:

>

> From: " FEAT " <FEAT@...>

>

> FEAT DAILY NEWSLETTER Sacramento, California Letters: FEAT@...

> " Healing Autism: No Finer a Cause on the Planet "

> _____________________________________________________

> Autistic Daughter's First Period / Indiana Vaccine Injury Report

> Monday, February 28, 2000

> Also: Social Insecurity: Asperger's

>

> [This report comes from East Coast editor . Here are

> some useful talking points to discuss with your daughter's physician.]

>

> A number of my friends have been worrying about their autistic

> daughters getting their first periods.

> I questioned why a 10 year old autistic girl should have to deal with

> a menstrual period at all--these kids have enough to contend with as it is.

> I knew from my own experience that gynecologists sometimes recommend that

> women simply take the active portion of the birth control pill month-round

> in order to stop having periods at all, and that this is standard practice

> among athletes and ballerinas. Taking the active portion of the pills 28

> days out of 28 is a safe practice since the " period " women have when taking

> the birth control pill is not a real period at all but simply breakthrough

> bleeding. A birth control pill period is bleeding due to the sudden drop

> in estrogen when a woman switches from the active estrogen/progesterone

> pill to the iron pills included at the end of the package. (Personally I

> question whether that sudden drop-off in estrogen every month is a good

> thing, but I don't know.)

> (The story I've read as to why the pill was put together this way is

> that the doctor who invented it assumed women would miss having their

> periods, so he structured in a fake one. I believe it.)

> I also knew from my reading that " incessant menstruation " (i.e.

> monthly periods for years on end--this is the term for it) is considered to

> be a health hazard. In a " state of nature " women would begin having babies

> and nursing shortly after becoming fertile; they would not spend 30 years

> having menstrual periods interrupted by a couple of pregnancies and 6

> months of breastfeeding. Constant menstruation is the cause of diseases

> like endometriosis, which " native " women apparently do not get; it may also

> be linked to ovarian and breast cancer. (Women who've taken the pill for

> many years have demonstrably lower rates of ovarian cancer.)

> So of course I was thinking the best course would be simply to give

> autistic girls the birth control pill, and continue the active portion month

> round. I emailed my sister-in-law, a nurse-practitioner who is on the

> faculty at UNDMJ (and who I trust on every and every medical issue--she's

> incredibly sharp) to ask about this and received this response:

> Dear : I have some preliminary info for you. What I am

> being told by the adolescent practitioners on the faculty here is that the

> best thing to do is to place these girls on Depo Provera injections as

> opposed to the pill. They get a shot once every four months and that is

> that. I still am looking into OC use for 28 days as well. Love,

> * * *

>

> Vaccine Injury Report - Indiana WTHR

>

> This Wednesday in central Indianapolis, Indiana WTHR Newscenter 13

> (NBC) will air at 5:30 pm an interview they did with Representative Dan

> Burton and his daughter le Sarkine with her kids, and Barbara Loe

> Fisher on vaccine injuries. The website for WTHR is http://www.wthr.com

> * * *

>

> Social Insecurity: Asperger's

>

> [by Ijams Sargent in the Sunday Boston Globe. Not available

> on line. Thanks to G.]

>

> What is the definition of social awkwardness? If you are a young

> person, it might mean standing too close, talking too loud or for too long,

> turning your back on a conversation, or never meeting your friend's gaze. It

> might mean being physically awkward as well, never really getting the hang

> of team sports or the rhythm of a pick-up game on the playground. It might

> also mean feelings of severe anxiety in the presence of large, noisy groups

> of people or unusual situations.

> In the past, well-meaning educators and parents have thrown up their

> hands and labeled such kids as lovable misfits, without closely examining

> the common thread that ties these behaviors together. Or, in the more severe

> cases, the parents would explore mental-health resources and often came away

> with conflicting answers and more questions.

> Now a relatively new diagnosis has put a name to these debilitating

> characteristics. It is called Asperger's Syndrome, a neurocognitive disorder

> defined by a severe shortage of social skills, lack of eye contact,

> attention issues, clumsy motor coordination, and often a peculiarly

> excessive focus on particular interests.

> " We had been told he was retarded, that he had a seizure disorder, we

> had him tested for fragile-X syndrome, " says , a mother of a 13

> year old boy with Asperger's Syndrome. The disorder has qualities that mimic

> numerous other diagnoses, and often many children - and adults - find

> themselves mislabeled.

> " The syndrome has fallen between the cracks of (different) disciplines

> as well as the educational system, " says Dr. Fred Volkmar, professor of

> child psychiatry at Yale University School of Medicine.

> In order to serve his clients more completely, Volkmar knew Asperger's

> Syndrome, or AS, needed to be teased out of the vasttabgle of learning

> disorders that could be labeled in a child who in reality had the syndrome.

> In 1994, he and his colleague Dr. Ami klin, were instrumental in AS's

> inclusion in the Diagnostic and Statistical Manual, a bible for

> mental-health professionals. Asperger's Syndrome was named for pediatrician

> Hans Asperger, who in 1944, observed a small group of boys who displayed

> unusual behaviors, both linguistically and socially. But his doctoral thesis

> went largely unnoticed until the early 1980s when renewed interest revived

> the pursuit of study on this subset of the population.

> AS lies on the high-functioning end of the autistic spectrum. " It's a

> bit like visual impairment, you've got kids who are blind, that's classic

> autism, then you've got kids who need to wear glasses, that's AS, " says

> clinical psychologist Tony Attwood, author of " Asperger's Syndrome: A guide

> for Parents and Professionals. "

> But unlike autism, children with AS often have no language

> difficulties or delays. In fact, precocious verbal ability often masks their

> troubles with life skills. " You might have a ten-year old with the verbal

> skills of a 14-year old, and the social skills of a 2-3-year old, " Volkmar

> says.

> Kids who are unable to decipher body language and facial expressions

> are at a large disadvantage because, according to Volkmar, up to 80 percent

> of communication is nonverbal. Misreading these social cues leads to great

> difficulties when making friends and sustaining relationships.

> Everything conspires to the worst set of circumstances for kids with

> this kind of disability, " says a mother of a middle-scholar with AS. " My

> son's reactions are off because it hard to know - is it good-natured joshing

> or vicious horrible teasing? "

> Volkmar says, " It's not that (these children) are uninterested in

> social interaction, it's that they are so inappropriate. Their social

> difficulties are severe and persistent. "

> The reason for these poor nonverbal skills emanates from a dysfunction

> in the temporal lobes of the brain. In AS patients, the right side of the

> brain, which governs cognitive ability, is thought to over-compensate for

> the diminishment of functions in the other areas of the brain. According to

> Attwood, " They solve social reasoning problems as others would solve an

> algebra problem, with intellectual effort. "

> This kind of impairment means other kinds of problems as well. The

> ability to integrate the kaleidoscope of everyday sensory information is

> very difficult for those with AS. An overload of sights, sounds, and smells

> can overwhelm the person with acute anxiety. " They go to school, which I

> call a social minefield, and they get very anxious and they may get very

> angry, " says Attwood.

> This anger is often misinterpreted by teachers as simply oppositional,

> but it is usually a reaction to overstimulation. " Teachers see them as

> troublemakers, as bad kids, as defiant kids, as kids who don't want to go

> along, " Volkmar says. " They don't appreciate their weaknesses in other

> areas. " These children have many strategies for keeping their anxiety at

> bay, and one of the strategies can be a hallmark of AS, what the diagnostic

> criterial calls their " restricted and repetitive behavior patterns " . This

> partly describes the narrow interests that can consume much of these kids'

> free time and conversation. Though the subject matter may change over the

> years, when these kids find an interest or a hobby, they often become its

> slave rather than its master.

> " This is not your usual child who has a penny collection or an

> interest in dinosaurs, " Volkmar says. " An AS child graduates to other things

> that become much more unusual. I know of someone who knows the name of every

> member of Congress, the wife's name, and the street address, the children's

> names, their dates of birth, the whole nine yards. "

> The interest can become the child's whole world and often is the

> initial starting point of underscoring his social awkwardness. it also can

> be a place of solace, of predictability for those who find their world a

> chaotic, random place. " I think of Tom's interest as a comforting

> distraction, not necessarily a negative, " says about her son.

> " The obsessing comes when he is feeling overwhelmed and that's a clue to me

> to find out what is really going on. "

> Attwood believes that tenacious individuals with AS have made valuable

> contributions to the world. " I don't see AS as a tragedy, " he says. " ...I

> see that many advances in science and art have been made by people with AS

> with their different way of thinking. "

> Indeed the precocious abilities of those with AS have enabled many to

> excel in their chosen fields. But at school age, their very intelligence

> camouflages their struggles in managing the rest of their lives. It is not

> long before the social problems come nipping at the heels of their academic

> proficiency. " In almost every instance, eventually, the AS gets in the way.

> The social aspect affects the educational component, " says Dania Jekel,

> executive director of the Asperger's Association of New England, an

> organization that runs a clearinghouse for information on the syndrome.

> Treating AS requires fine-tuning therapy to the patient's most obvious need.

> Some might need to feel comfortable starting a conversation and may attend a

> socialization group to work on pragmatic language skills. Others might need

> to integrate their world more completely so that they can transition

> smoothly between activities. This might mean cognitive therapy with a

> mental-health professional.

> Because most children with AS have normal intelligence, many attend

> conventional schools. Once there, most experts recommend immersing the child

> in as many mainstream activities as possible. Because sensory overload can

> come with team sports, lots of AS kids choose to participate in sports that

> emphasize the individual, such as track or skiing. Psychiatrists and

> mental-health professionals often prescribe medication to combat the related

> twin demons of AS: anxiety and depression. As Attwood points out, those with

> AS " are acutely aware of being different and that may lead to secondary

> psychiatric problems. "

> Because AS is new on the mental-health radar screen, parents often

> find themselves doing battle with administrators and educators. The

> diagnosis requires parental vigilance and an ability to take the long view.

> Many with AS lead full lives, complete with jobs and marriage. " What these

> individuals do, by their heroic endeavors, and, we hope, training, is learn

> intellectually how to solve social questions, " says Attwood. But, for some,

> merely making those with AS " pass " in the larger world undermines their

> uniqueness.

> says, " These kids need to be accepted for themselves, I

> don't think they need to be changed. I think they need to find their

> niches...and Some resources on Asperger's

> Information on Asperger's can be found in books and on the Internet.

> Because there is a lot of ongoing research on this topic, the Web keeps

> current with the latest news and treatment options.

> Discussion groups on varied topics abound, as well as message boards.

> Parent-to-parent advice is often compassionate and on the mark. As with any

> Web sites, make sure the source is legitimate. Here are some of the most

> comprehensive sites.

> http://www.udel.edu/bkirby/asperger/ http:/www.asperger.org/

> http://www.aane.org

>

> ~~~~~~~ WHY YOU MAY WANT TO SUBSCRIBE (NO COST) TO ~~~~~~~~

> FEAT's Daily Newsletter: Each day we collect autism features & news as

> it breaks. To Subscribe (or unsubscribe): http://www.feat.org/FEATNews

> ____________________________________________________________

> FEAT: http://www.feat.org Search: http://www.feat.org/search/news.htm

>

> Editor: Lenny Schafer | Eastern Editor: | News Wires: Ron Sleith

> schafer@... | PhD | RSleith@...

>

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